Praise and Joy (I think)

Carnival relies on volunteer clergy to hold Sunday services, and none were forthcoming for our cruise, so we decided to have a little service on our own.

The group services lady was most accommodating and set us up for Sunday morning at 10:00 in the Neon Bar.  It has a piano to accompany our songs.

So the venue was a bit out of the ordinary but Anita and I did the best we could, singing "This Little Light of Mine" and readings from Corinthians.  We talked about the meaning of the scriptures (I almost fell off my bar stool, a novel thing to happen while leading devotions).  Then a few of the Ranchers wanted to pray.  The prayers mostly spoke to their love for their parents and their history with the Ranch, sometimes from infancy.

It's hard work to understand the feelings underlying their words, true of everybody of course, but especially in the case of the Ranchers.  I believe our calling, however, is to serve as witnesses and interpreters of their deep longings.

All in all things got pretty weepy.  Emotions seem to bring forth tears, even if they are expressing joyful feelings such as a deep love and appreciation for their parents, as Mark did, or Sterling's love for Kelly and their hope to marry.  Anita and I talked later and decided their tendency to cry is in response to the strength of the emotion itself, and not whether it was what we think of as a sad or happy emotion to begin with.

Sure enough, after the service everyone was happy and ready to party away our last day on the Ecstasy.  Another few good meals, some time in the hot tub, another round of karaoke, and more dancing!

If there's one thing I've learned from our Ranchers, it's this: while we have the legs and the breath to do it, it is a good thing to dance, at all times and in all places. 

And I can think of no better way to show gratitude for the life I've been given, and all the blessings of this day.

Day on the Beach

Well, we all survived our first day at sea, and none of the residents got seasick, though a few staff members did.  Woke up this morning with the ship docking at Cozumel, and off we went for our day on the beach.

Weather perfect: mid 80s, clear skies, gentle breeze.

We arrived at the beautiful beach about 10:30 and spent half an hour and about $234 in sunscreen getting ready for our exciting day.  Mostly exciting for the staff, trying to track 17 souls heading off in various directions, some of which included deep water.

Casey and Marci, our fearless lifeguards, were stationed at the ready.  Sandy made sure everyone who wanted to go out on a kayak or a paddleboat got to do so.  John and the guys jumped happily upon the floating trampoline.  All in the azure waters of the Caribbean in this locale.

Several elected to get fake tatoos, pictures with large macaws and godzilla-like lizards.

Back at the dining room, glowing pink and dressed in our cowboy finery, we definitely made the most noise in honor of our wait staff.  We do NOT lack for enthusiasm.

The Ranchers are mostly off for karaoke followed by the deck party dance afterwards.  I am ready for bed.  I plan to get up at 1:00 AM to see the full moon over the Caribbean. 

Maybe, anyway.

Tomorrow we hold our own Sunday service in the Neon Bar.  Should be interesting.  Hasta manana y que suenen con los angelitos!

From the High Seas

Well, we made it onto the ship Ecstasy.  The trip here was smooth and uneventful, which is the way we like it.  Getting through all the embarkation stations at the pier however was something else.

Casey the wonder case manager, however, saved the day. 

She'd made a binder to hold everyone's paperwork and passports that now weighs in at about 22 pounds.  After she checked in our gang the man she'd been working with almost went overboard (a real possibility considering where we were) with praise for our gal. 

It's nice to meet someone with true appreciation of the potential of a smart woman in possession of an industrial-grade paper punch!

Didn't have to do the dreaded flotation device drill.  Instead we sat in the lounge and were instructed what to do in case of an emergency.  The message I think we came away with was, show up in the Starlight Lounge with a stiff drink and paper umbrellas in your hair.  It could be worse, I guess.

There was a fair amount of stress concerning the delivery of the luggage, but only because our people really dislike being separated from their belongings.  Really dislike it.  Finally it all showed up and got properly stowed away.

And the wild rumpus began.

Stay tuned.

I'm Too Old For This!

Good grief!  Casey, Denise, and I have spent all day getting ready for the cruise.  We leave tomorrow.

The Ranchers are zinging off the walls.  Their bags are packed (yes, we used a list). Medical records are stashed, passports checked and double-checked, snacks bought for the trip to Galveston, the vehicles cleaned and gassed and safety-checked, the bus driver hired, and a zillion other details seen to.

On top of the whirlwind of activity we were engaged in today, a local energy company was working right in the heart of things replacing gigantic wooden utility posts and lines with monstrous concrete posts that look like something out of the War of the Worlds. 

Chief the paint gelding got so spooked by the machines and commotion he broke out of his stall and the paddock and gave Don and Lori an exciting chase around the Ranch.

A family had stopped by to do a self-tour of the Ranch with their young son, who has Down syndrome, and seemed gratified by the wild west scenario unfolding before them.

"As advertised," said I, with a wan smile.

And now I tumble into bed, exhausted, but looking forward to warm temperatures and soft beds as we make our way south.  We ask your prayers for calm seas and happy tummies on our way.

I'll keep you posted from the ship.

Ranch Story by Mark

Note: Mark has been coming to Ranch Camp since his early teens, and has lived at the Ranch since 2005.  He brought me this story to share with others.  It's presented exactly as he wrote it with some parenthetical assists from me for clarity.

Before I knew this place in my life it was beautiful place I never [read "ever"] been, with Kelly.  Before I knew Kelly she told me about her boyfriend Sterling together very long time I mat them in couple.  The year of 2003 they are beautiful couple I was there for it.  Before I moved at the Ranch I used to live at Barnabas [House] about 3 years with 2 ranchers is [We cannot release these names].  Then I moved to Impendent [Independent Living] house with Michael he is my friend in my life to become my best friend in my heart.  I have another story about Mike [a different Mike] before I mat him in 2005 at the Ranch I want him be my second best friend in my life.  Part of my life I want everybody to be together forever to have friends can to be trusted people.  I really want to help people make them understand and my life to be free no problems at all.  Guys this letter means to me I want us together.  Everybody didn't know I have dreams about people don't get along well.  But I understand everything they do here.  The last story about my special life I came here I was happy everyday was beautiful I talked my mother about the Ranch I was successful with this they are happy for me to have my own life & dream I always wanted.

Indeed, Mark broke his mom's heart when he asked to move to the Ranch right out of high school, but she and his dad respected his desire to have his own life and made it possible for that to happen.

After a year in Barnabas House, Mark and Michael moved into Timothy House, one of two Independent Living cottages we built.  They did well together in their little home with, of course, a good amount of staff support.  Alas, when we came under ICF licensing Michael and Mark both had to move back into the four-bedroom homes.  They seemed fine with it, although they enjoy reminiscing about their bachelor pad days.

Mark has two brothers, Brian and Scott, and a sister Shannon.  He grew up in Coppell, Texas and Omaha, Nebraska, where his parents still live, and is the proud uncle of three.

Mark loves helping out in the front office, making copies and running errands.  He also  helps give tours of the Ranch.

Hector and Ashley

A surprising joy of becoming the parents of a child with Down syndrome is meeting so many families you wouldn’t otherwise get to know.

With them you share joys and sorrows about which most of the world is happily unaware. You are on a journey together, and you learn to rely on and trust one another like soldiers in a war zone.

And as you witness other families’ struggles and victories, you are sometimes privileged to see the human spirit at its best, inspired by, made strong by, and led by love.

But on occasion, doing so is almost more than you can bear.

Jerry and I met Hector and Ashley when our Kelly was in primary school and their Cristina was a toddler. They were much younger than we, but we clicked right away and discovered many things in common.

Hector and Ashley met and married at A&M and bleed maroon. Cristina was their first child, followed swiftly by two more little girls.

When we started Down Home Ranch, Hector and Ashley were among our earliest and most ardent supporters. Ashley served on the Board of Directors and the whole family fell out—and still does—for every event, big or small.

When they discovered that Ashley was pregnant with their fourth child, we rejoiced with them.

Things proceeded happily along, until one day I received a phone call in my office from Ashley.

“Judy,” she said. “Our family needs your prayers. There might be something the matter with the baby.”

She was in the fourth month, and a routine sonogram had picked up some disturbing information—the baby’s skeleton was not developing normally.

“Downs again?” I asked, but she said no, that it seemed to be something totally unrelated, maybe brittle bone disease or some kind of dwarfism or some combination of both. They would have to wait a while for more tests.

I asked her how she and Hector were doing, and she said okay. The baby was a boy. They’d found that out, too.

When I got off the phone I looked up brittle bone disease and my heart sank. Affected babies sustain massive fractures just from being born, and spend their lives in pain recuperating from one break after another. I couldn’t imagine Hector and Ashley and the girls having to witness their little one suffer so. I prayed hard for dwarfism. That was manageable, I thought. Sure, there would have to be lots of accommodations, but this family was used to that.

The rest of the pregnancy was filled with questions for which there were as yet no answers. The amniocentesis shed no light. Ominously, one of the possibilities mentioned was Osteogenesis Imperfecta Type 2, the most severe form of the brittle bone syndromes. If the baby had that, he would most surely die shortly after birth.

No one who knew Hector and Ashley doubted that they would continue the pregnancy, whatever the outcome. Even so, I still cannot imagine the courage it took, knowing there was a chance they would hold their baby for only a few minutes and then say goodbye.

But Hector and Ashley already knew that blessings come in all guises. This tiny boy, Hector David Sanchez was, and always would be, their son. They would keep him safe where he was for as long as they could, and hold him for his time on earth. He would know the love of his mother and father, his sisters and grandparents. They would place his future in God’s hands, as in truth, all parents must.

Ashley opted for a caesarean despite the fact that she’d had no trouble delivering the girls. She wanted to spare the baby the trauma of natural birth.

Hector David was born July 20 2001. It was immediately obvious that he would not live long.

The family took turns holding and loving him. He was baptized by their parish priest, and after 45 minutes, his little life ended.

When Ashley recovered from the surgery, baby Hector David was brought to Down Home Ranch, and his ashes buried in Sara's Garden under a large cedar elm, where a white river rock marks the space.

Hector and Ashley visit the spot during their many volunteering stints, and when Christine—now a lively, lovely teenager—arrives and departs from summer camp.

The Sanchez clan remains a happy, healthy family of six, from which one has departed, leaving behind a legacy of great love.

And life goes on.

Songs of Summer

Earlier this month, the Ranch shivered under sub-teen temperatures. The giant double palm in front of Benedict House that we feared would eat us alive someday may have bit the dust. Its giant fronds have turned brown. We won’t know if it survived until several weeks of warm weather have settled in.

But already this morning, after just a few days of temps in the 60s I noticed the Carolina jasmine putting out yellow blossoms.

And best of all, barn swallows have finally moved into the barn! Their cheerful chirps seemed so out of synch with the bitterly cold weather but today it’s warm and sunny—Texas winter at its most beautiful—and the little birds are busily scouting nesting sites.

Not everybody’s thrilled. Yes, I know they’re messy, but maybe they’ll eat flies or mosquitoes like their martin cousins. I love seeing them swoop and dart among the eaves.

The swallows have nested for years on the porches of our residences, and every house undergoes the annual drama of who will win out this year—the mother and father swallows, or the wily snakes that stalk the baby birds.

We’ve tried everything to protect them, but it never works and nature runs her course. Once we had the sad experience of watching the babies sit on the edge of their adobe nest and flap their wings, hours from fledging, and two hours later finding a contented rat snake with five distinct lumps distorting its lithe silhouette. The Ranchers were outraged by the injustice of it all and though we encouraged them to try to look at the situation from the snake’s point of view, we secretly agreed.

Anyway, I’m hopeful the vastly increased altitude of their nests in the barn will lead to an increased survival rate for the little ones. It’s a joy to see them take their first flights. They start off careening this way and that, but within 15 seconds have pretty much figured it out, and within 30 are able to land and perch —not gracefully, but all in all a pretty amazing learning curve.

From then on it’s a few days of intensive flying to build endurance, with Mom and Dad leading the way, wheeling around the area of their nests in ever-widening circles.

And so planet Earth wheels through the universe toward spring and summer.

That Extra Chromosome!

Kelly's 25th birthday party in the Pavilion with all her buddies.

On a recent trip to Kansas, at about mile #569 a voice chirps from the back seat:

“Mom!”

“What, Kelly?”

“What does that extra chromo, chromso, chromodome do?”

                                  Above: Karyotype Trisomy 21

She was talking of course, about the extra 21st chromosome that causes Down Syndrome. Our talks about her disability had advanced into genetics (though I must admit my level of understanding is about on a par with hers.)
                                                                  
It’s been a long journey.                                     

As a very young child Kelly blended in seamlessly with the other kids at her Montessori school.

Later on, in public school, that innocent time was lost. Some classmates were kind, most indifferent, and some problematic.

Kelly handled the schoolwork itself well up until fourth grade, when the curriculum became more abstract and she began to fall behind.

Then one day her social studies teacher, wanting to pass on some good news in a year when it was becoming scarce, told me a story about what happened in the classroom that day.

The students had formed two lines for a history bee. The subject was life in Texas during the 1800s, and the question that fell to Kelly was “What did the cowboys take to Kansas on the Chisholm Trail?”

When the teacher read the question, she said that Kelly’s team began to moan and groan, thinking she wouldn’t know the answer and they would lose the bee. But Kelly hung her head and whispered shyly “heifers.”

Most of the kids on her team were upset, thinking she’d got it wrong. But a few ranchers’ kids started saying, “Kelly got it right! A heifer’s a cow. Cows are what they took. We win!” The teacher agreed.

A triumph, yes, but bittersweet at best, and the story itself enough to convince Jerry and me it was time to get Kelly into an educational setting where she could enjoy more success than failure. The next year we moved her into the Life Skills classroom at the middle school.

It was a good placement, and she did well there. And confronted with a wide array of disabilities in her new classmates, Kelly became more aware of her own.

We’d never hidden the fact that she had a disability, and its name was Down syndrome, but she’d never been that interested. Then one day she got out her Where's Chimpy book and stared at the pictures of the little girl who searched for her stuffed chimpanzee.

“She looks like me,” said Kelly.

“She has Down syndrome, too,” I said.

“Oh,” said Kelly.

So on and off we talked about it, and its causes, and that pesky extra chromosome, and although once during high school she declared hotly, “I don’t LIKE Down syndrome!” these days she seems pretty much at peace with it.

Maybe that’s because now most of her good buddies at the Ranch and off have it, too.

At Down Home Ranch we’re routinely accused of not “getting it” when it comes to our effort to build a community in which our daughter can enjoy a good life among friends with similar interests and abilities. The academics and agency people feel people with Down syndrome and other intellectual disabilities should live independent lives in the city.

Well, we checked out living options for adults with disabilities when Kelly was a toddler. We didn’t like what we saw. The people seemed lonely, often living with people they disliked or found threatening, having limited opportunities to go places and do things.

We wondered, “Where will Kelly’s circle of friends come from? Who will invite Kelly out for pizza and a movie?”

Friends of kids with Downs in high school reported they got lots of high fives in the hallway, but no invitations or offers of friendship, unless they were part of some organized (and always short-lived) project. After high school, most kids wound up sitting around the house with nothing to do, with a “tagalong life.”

You know, tagging along when others went about their errands or social life.  "Hey, Kelly.  I'm going to the library.  Want to come along?"

We thought our daughter deserved her own life, with the chance to make real choices, and earn money, and interact daily with a group large enough that she could pick her own friends.

That’s why we founded the Ranch, and it works.  If it stops working for Kelly or other Ranchers, we'll help them find a different model, but for most, right now they are able to enjoy their young adulthood like other young adults--learning to work, get along with peers, and have a rich social life.

The Wrangler

Austin nudges Travis at feeding time

January 15 2010

It’s a cold, rainy winter day. The buzzards are perched on the electric line towers with their giant wings spread open, adding a mournful aspect to an already dreary scene.


Last week we dealt with lows in the teens and below for several straight days running. But through it all the staunch barn team carried on. I marveled as I sat shivering (and sniveling) in my barn office.

Kyle, Sterling, and Travis all live in Joseph House.  Don expects them to be up and ready at 7:00 AM to feed the horses on the Spur.  If they aren't he bangs on their windows until they come tumbling out.  (They really love it on the rare occasions that Don oversleeps and they get to bang in his window and wake him  up.) 

After feeding, the guys have breakfast and come to the big barn,where Natalie, the fourth member of the Barn Team, meets them. The four  worked uncomplainingly all last week cleaning the stalls in the bitter cold, moving the horses from inside to outside stalls as needed in order to get it all clean.

Tuesday, I watched our newest Rancher, Kyle, taking Pete out to pasture.  Kyle is just learning the ropes of horse handling. He'd let his lead slack a bit too much and Pete moved his head over towards Kyle. Kyle dodged to the left and Pete obliged by swinging to the left also. Kyle kept moving  and soon he and Pete had completed a 360 degree circle. They made a little progress toward the pasture and then Pete swung his big head over towards Kyle again.  They repeated the maneuver two more times before Lori looked back and saw what was going on. She went over and helped Kyle shorten his lead and showed him how well behaved Pete was when he was firmly directed.

I marveled at Kyle’s determination and courage with Pete, even as I chuckled their little dance. Kyle’s not a big guy, and has little experience handling horses. He clearly felt intimidated by the big chestnut, but was brave and determined to do his job.

Kyle came to Down Home Ranch because he wants to work on a real ranch and he was going to hold up his end of the bargain.

It’s funny, but lots of people say things like, “Oh, people with Down syndrome are so…” and then generally fill in the blanks with a rather limited repetoire of adjectives—stubborn, charming, sweet, cute, funny, friendly.

But people with Downs are more complex than that.  Like other folks, some are willing to work hard and some aren't. Some are courageous and some aren’t. Some decide what they want in life and others wait passively for whatever life has to offer. 

They’re people first—a complex mixture of genetic material, upbringing, and self-determination.

The DHR Barn Team is a group of hard-working young people who don’t complain and who work outside their comfort zone  and come back for more.

“We’re cowboys!” the guys say when they turn out of a morning to feed their horses. They’re proud of their work and know they’re good at it.

And I'm proud to know them.

TX 21 AL 37: Sweet Defeat, Bitter Victory

January 8, 2010




I’ve decided that every now and then I can do a “hoopdedoodle” (with a nod to John Steinbeck) on the blog and write about things that have little or nothing to do with Down Home Ranch.

Like most of Texas last night, Jerry and I settled in to watch the Texas-Alabama game. I really don’t care much about football, but this game was a must. Even the maroon-bloods (Aggies, to you non-Texans) at the Ranch all drove in to Taylor to watch the game on the Howard Theatre screen. We were all rooting for the Horns.

Alas, the evening was not destined to go as planned. When Colt McCoy’s injury took him out early in the game I commented to Jerry, “This stinks for both teams. What a pity!”

“What are you talking about?” he retorted. “This hands Alabama the game on a platter. It doesn’t stink for them!”

“My point exactly,” I said. “Texas doesn’t get to be the team they are, and Alabama doesn’t get to play the team they came to play.”

But I was wrong on both counts, and so was Jer. Alabama won, but the victory sure as heck wasn’t handed to them on any platter, and they’ll never know how things would have turned out with the great McCoy in the game. That’s got to sting.

Sometimes you can’t help being as proud of a loss as you would a win, when a kid a few months out of high school has to walk out on the field and take over for a legend and your team closes the gap and darned near seals the deal.

I call it a sweet defeat.

Cold & Common Sense

Michael braves the chill!

Common Sense


January 7, 2009

The wind is howling, and the thermometer is dropping. The coldest temperature in ten years is predicted for tonight, so today will be spent getting ready. Every spigot, every potentially exposed pipe, a multitude of plants, and a Noah’s ark of animals must be protected.

And of course the Ranchers! Speaking of which, if you read the Ranch’s rules dictating what Ranchers must wear at any given temperature and under what conditions, you’d think we had lost our collective minds.

“What about common sense?” you’d ask.

To which we might well reply in exasperation, “What common sense!?”

After eight years of residency, we’ve learned that the notion of “common sense” is merely wistful evidence of wishful thinking. My turtleneck, gloves, and muffler weather could well be your signal to haul out the shorts and flip-flops.

So, we did what every good organization does in such circumstances. We wrote a policy, and made charts, and distributed them, and talked about them, and made dark predictions of what would happen should they be ignored.

Jerry tells the story of when he interned at Mt. Hood Community College as part of his requirements for his Ph.D. in Educational Administration.

The first day on the job, the president of the college walked into his office toting several board feet of binders, which he summarily dumped on Jerry’s desk.

“Here,” said he, “is the history of human failure at Mt. Hood Community College.”

And so it was, and so it is, and so it ever shall be.

When we came under state licensure, we came under statutes, rules, and regulations that rule out any need for common sense. It’s all written down in black and white. Follow it and you’ll be in good shape.

And we can’t disagree with 98% of it being as it’s intended to protect, defend, and assist those we care for.

The problem is, it’s possible to be in perfect compliance with the regulations and still not be a place anybody in his right mind would want to visit, much less live.

The nexus of the problem was identified several thousand years ago in the words, “The letter of the law killeth, but the spirit bringeth life.”

We walk a daily tightrope, following that letter and ever striving to bring life to the work we do and in many ways it’s the hardest part of what we do. When it’s 40 degrees, and the wind is blowing, and a resident refuses to wear a jacket, what do you do?

Regulations say he has the right to make a choice and suffer the consequences. They also say we have a duty to protect him from the consequences of his disability. What do we do?

Not to worry, this is a day when we will use our common sense!

Today is Epiphany.


As Kelly would say, "It's my favorite."

When all the folderol of the season, sacred and secular, has begun to quiet down, one of the highest holidays of the liturgical churches takes place to commemorate the recognition of the world that new Light has come into it.

Personally, I feel that Epiphany wraps me in light, love, and promise as I say goodbye to the Christmas season. The Ranchers love ceremony, so last year I put together a short one to share with them.

I sent Barry out to buy the roscas--the circular breads studded with candied fruits and nuts traditionally eaten in the Southwest on Three Kings Day, another name for Epiphany.

We found a tiny figure of the Christ child to hide in the rosca. (Tradition holds that the person finding the Christ child in their portion has to give a party for everyone else on the 2nd of February.)

We gathered together in the Pavilion. I gave each person a candle, lighted my own, and turned out the lights. Enveloped in inky darkness except for the small flame I was holding, there were shouts and murmurs and a few wobbly whispers of "I'm scared!"

"Hold on," I said, and lit the candle of the person next to me.

"Oh, I get it," she said, and lit her neighbor's candle.

As the golden light of the candles filled the room, we began to sing "We Three Kings of Orient Are," and processed up the hall to the dining room, where I had placed a creche with the Wise Men (plus Mother Teresa, for good measure) gathered in front of the manger before the Babe.

The Ranchers set their candles on the table and Terry read the scripture passages having to do with the coming of the Magi, the threat from Herod, and the flight into Egypt, by their light.

"Jesus is the Light of the world," I said. "Epiphany is when the world came to know that."

Then we turned on the lights and had our hot chocolate and served our rosca.

Natalie  found the Christ child, which obligated the Teresa House ladies  to give a party on February 2. Much cheering ensued.

Tonight, we'll do it all again.

And may your Epiphany be filled with Light and love.

The First Ever Soon-to-be-Annual New Year's Eve Slumber Party at Down Home Ranch

Marci, Lead Teacher , and her sister Lori, who works with the Ranchers caring for the horses and managing the barn,  are fondly referred to here at the Ranch as "The Fabulous Jones Sisters." 

Marci and Lori offered to host a slumber party in the Lodges for the Ranchers who had returned from their Christmas break by New Year's Eve.  The Ranchers thought this a fine idea, and plans were made for yet another round of holiday party food, movies, karaoke, games, and watching the neighbors' firearms.

S'mores around a bonfire were in the plans, too, but a gusty cold front helped the Ranchers decided the s'mores would taste just as good baked in the oven.

The evening's revelry unfolded happily as planned.  However, we have a tradition here at the Ranch of celebrating the arrival of the New Year with Barbados, where we think it's midnight just as our clocks are striking 10:00 PM.  This didn't set too well with some of our newcomers, who insisted on staying up until Texas midnight, according to Marci.   I'll let her tell the rest of the story in her words:

"At about 10:30 most of us were getting really tired and some of the Ranchers wanted to know if we could celebrate early so they could go to bed.  While Anita and Lori were singing karaoke with the Ranchers I changed the clock on the wall to 11:45 PM.  I was caught redhanded and fussed at by numerous Ranchers, but I put it back on the wall with Barbados time anyway. 

The singing continued and no one wanted to stop singing for the countdown.  (I won't mention that it was mostly Anita and Lori who wouldn't stop singing).  After 13  minutes more of singing, Anita took the clock down and changed it back to 11:45 PM!

Crystal and I refused to take this sitting down,  and we changed it forward 10 minutes!

At last we did the countdown, blew our horns, yelled for 5 minutes, drank sparking red cider to celebrate and sang "It's 5:00 O'Clock Somewhere"(substituting 12:00 O'Clock for 5:00 of course).

After all the noise, we made a circle and almost everyone gave a wonderful toast to the coming New Year, invoking God, friends, and the blessing of living and working at Down Home Ranch."

I can tell you, the blessing is ours--blessed with staff who care, who enter joyfully into the world and lives of our Ranchers. 

Judy Horton, Down Home Ranch

The Packing List

January 1, 2010


The Packing List

Here at Down Home  Ranch, the Ranchers are filtering back from time spent over the holidays with their families. Not all left, but most did.

We’re all feeling a bit bloated from an excess of holiday feasting, and a bit off kilter from too much time spent out of our normal routines, despite the fact we’d longed to get away from them a while. I’m in a pensive mood, somewhat put out with myself.

Over the years, raising our daughter Kelly (who has Down syndrome) I’ve had to face again and again the real implications of Kelly’s disability, and just how serious they are. Each time it happens, it’s like a slap in the face, and always because of what I should have been able to see, but didn’t.

My latest little epiphany on this front happened because of Kelly’s coming to stay with us over the Christmas holidays. When I drove over to pick her up, she had packed half her very extensive music collection, practically all of her clothes, and everything else she could conceivably cram into a bag, a backpack, or a suitcase.

“Kel,” I said, “for heaven’s sake, you only need stuff for a few nights.” To this she gazed at me wonderingly and asked, “I do?”

“Yes, my dear,” I persisted, my death grip on logic showing in my tone of voice. “Remember, you’re only a few houses away. We can go over any time to Martha House if we need to get something else.”

“We can?”

Whatever, I thought, too much in a hurry and too distracted to pursue it. I ceded the battle and hauled all her worldly possessions to Benedict House, where Jerry and I live, and installed them in the guest room.

This packing issue had come up more and more lately because Jerry and I recently bought a small condo unit in Austin. Every six weeks or so Kelly, and sometimes her boyfriend Sterling, spend the weekend there with us. Each time we go through the “Why-did-you-bring-all-this-stuff-with-you-if-you’re-only-going-to-be-here-one-night?” litany. (We go through this with Sterling, too.)

Well, the week after Christmas we’d been planning to take Kelly and Sterling to San Antonio for a night on the Riverwalk, but things came up at the Ranch and we decided we couldn’t afford to be away for two days. So as to not disappoint the kids, we decided to spend the night at the condo and take them out to a movie and dinner.

This time, however, I had a bright idea. I’d give each of them a packing list: This and no more! I carefully typed it out, along with place to check off each item, gave one to Kelly’s RA and emailed one to Sterling’s mom.

They were thrilled to have the packing list. They followed it to the T. No muss, no fuss, no bother. And they were proud of what they’d done.

How could I have been so dense?!

When the light bulb finally came on driving back to the condo after picking Sterling up I could have banged my head on the steering wheel in frustration—not with them but with me.

They hadn’t been ignoring me when I told them vague things like “You only need stuff for one night” or “Just bring what you need.”

All along, they’d literally had no idea what to bring for how long. All I’d succeeding in doing was to make them feel bad about having tried their hardest to cover all their bases.

I’d set them up for a failure each time we’d gone through that charade.

So my New Year’s Resolution is to try, harder than ever, to experience the world through their eyes.

C. S. Lewis wrote that Montaigne became kittenish when playing with his kitten, but the kitten never discussed philosophy with Montaigne.

Kelly can never discern the world as I do. The burden is on me to try ever harder to discern the world as she does, given her significant limitations.

This might seem a rather sad and poignant starting place from which to launch the New Year. It might be if I didn’t know the many joys that await me when I do slow myself down and try hard to see the world through my daughter’s eyes.

But I do know. And much more on that in the days to come…